I have it and I'm freaked out

[Jenrobin]

After having what I thought were recurrent yeast infections, I went to the gynecologist today and was diagnosed with this strange thing. I am so miserable and depressed. Now I feel like I always have a yeast infection, but don't. He gave me a perscription for this labia, anti-inflammatory cream. I can't believe I have this and IC. Is there hope? What are some common treatments/creams that work? He said to give this one a month and apply it every other evening. This is affecting my whole life and I don't know what to do anymore. I sometimes feel like crawling into a little ball and giving up. frown

[liz2]

Life can be so frustrating and overwhelming at times. I know what you mean about wanting to crawl into a ball and give up, but somewhere deep inside of you there is strength to fight and to cope. I have been there and I have dug my way out of that black hole. You can do it, too. I am sending a grouphug your direction.

[poetgirl]

Hi JenRobin,

I know exactly how you feel. The IC was enough of a hassle before the vulvodynia. Now they both seem to feed off each other. And most days it seems like the VV is worse than the IC. I think the meds I'm taking for the IC are helping keep it mostly under control, but I can't seem to get rid of the burning/inflammation for very long. Hopefully my gynecologist will find something that finally works for me.

There are some resources out on the web that detail some self-help treatments, like baking soda sitz baths or always rinsing the vulvar area with water after urinating. They can at least help provide some symptomatic relief.

Hang in there -- you're not alone. I most definitely understand what you're going through. grouphug

[Kelly R.]

Hi JenRobin.

I know how getting that diagnosis feels. But it is treatable, and many of the treatments are complimentary/helpful for treating IC (all part of the same problem, according to my doc).

The Vulvodynia Support site lists treatments in the FAQs, and also has a terrific set of links. Personally, I've found taking a tricyclic antidepressant, changing my diet, and surgery (my case was really bad, so don't let that freak you out) to be the most helpful treatments. The antidepressants are amazing - a true lifesaver for me. I can't comment on the cream, not knowing what it is. I haven't had much luck with creams (lidocaine, estrogen, etc.), but lots of women do and they are the least invasive treatment - a good place to start.

It also helps to watch what items that have contact with your vulvar area. No fragrances of any kind, soft TP, no tight pants (esp. tight jeans!), white cotten panties (rinsed twice), no horseback riding, bike riding (at least not with a standard seat)... If you must use soap there, Cetaphil usually is the brand of choice. There are tricks and techniques that can make romantic iterludes much easier as well. wink

Good luck.

[Jenrobin]

Thanks for all of your suggestions! I went to my urologist on Monday and he said there is definitely a link between IC and Vulvodynia. He said once the IC gets better, the Vulvodynia will, too. I don't know about that. But I HAVE learned that jeans are out! I am planning to buy Ivory laundry detergent and check out some of the sites to learn about other treatments. What about natural remedies? Has anyone explored those with any success?

[poetgirl]

I haven't heard of any natural remedies that are supposed to help vulvodynia, other than possibly following the low-oxalate diet and taking calcium citrate supplements. There is some controversy over whether or not the low-oxalate diet helps (I think it's one of those things that works for some people and not for others.)

My gynecologist never restricted me from cleansing the vulva area (I always use Cetaphil.) I know the whole point is to decrease possible irritation but washing with water alone does not effectively remove bacteria, which can lead to possible infection (especially for people who are prone to recurrent UTIs) and even some further irritation/itching.

[Pristine]

I was taught in Hawaii to simply wash with warm water thoroughly and use soap only on the pubic bone area, simply letting water clean the sensitive areas. I cant use any type of soap or bath stuff in my vaginal area. I will go into horrible flares if I do. I dont feel unclean at all for doing so and my Dr says its fine. I have actually more UTIs if i use soap.

[ICNDonna]

I have children with skin allergies and have some myself. I was told by my children's allergist to use detergent to wash clothing --- never soap.

I finally found a detergent that works for the entire family --- but I always double rinsed clothing for the kids to be certain there was no detergent residue.

Donna